Question:- what changes can illness like Interstitial cystitis bring to your life?
1. The major change was diet. With ic I can’t take grains like wheat or barley , because it contains gluten, elimination of sugar( yeah! Won’t lie, I cheat sometimes), caffeine, anything with food colours, processed , carbonated and have to avoid everything citrus too.
2 . I no longer can wear jeans or tights . This hurts my bladder.
3. Lots of washroom visits. If I am out of my home or traveling, need to make sure that I have access to washrooms. I can’t hold my pee for long. If I try to control it gives me an immense bladder pain like shards of glass are piercing me apart.
4. Have a functional day. I can’t work much or go out regularly. It leaves me with flare. I need to rest for a significant amount of time daily. I need to pace my activities and use my energy judiciously.
5. Regular appointments with urologist, therapist, pain specialist and physiotherapist .
6. Keeping myself stress-free. As stress is a major reason of flares.
7. Most difficult is to admit that I need to rest and not push myself beyond limits.
8. On a positive note I have many friends who have Interstitial cystitis and we are pretty close. They understand me better than my family or other friends.